Wednesday, January 18, 2006


A few posts ago, I revisited the tragic death of Abubakar Tariq Nadama, an autistic child who was stricken while undergoing chelation with intravenous EDTA. My purpose was not to extol the virtues of chelation, or any particular species of chelation, as I have never considered it my place to recommend any particular protocol. Indeed, every case of autism presents a unique clinical situation, and there is no one-size-fits-all solution. But in some cases, chelation may well be a component of a comprehensive program.

My real purpose in revisiting a painful incident was to critique opinions that the tragedy proved that all chelation is unreasonably dangerous. Because one of chelation’s most vocal internet critics expressed a reasonable opinion that the direct cause of death was hypocalcemia, I took pretty seriously the rampant rumors that the treating physician, Dr. Roy Kerry, mistakenly used Disodium EDTA rather than Calcium EDTA. Although I ordinarily believe it wise to avoid spreading rumors, it seemed the most likely explanation for hypocalcemia. Moreover, the rumor’s liklihood provided reason enough not to express firm opinions about the lessons to be learned until we knew the full truth. It now appears that the rumor was true.

The Pittsburgh Post-Gazette reports that the autopsy report was obtained and reviewed by Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control and Prevention. The CDC is not generally known for its endorsement of the hypothesized link between heavy metal toxicity and autism. Nor can Dr. Brown, a recognized authority on chelation, be considered a proponent of chelation as a treatment for autism (as is apparent from the article).

Despite any reservations Dr. Brown may have regarding the efficacy of chelating autism patients, she does not place the blame for this death on chelation itself, but rather on the wrong form being EDTA used:
“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”

The article indicates an opinion by Dr. Brown, that “if it were administered accurately, the procedure would be harmless.” That statement is debatable. We must never ignore the fact that chelation, like most medical procedures, carries a degree of risk. And that risk must be carefully analyzed and weighed before chelation is considered.

Like any prudent parent, I want to see appropriate clinical trials conducted to determine both the efficacy and specific safety of various forms of chelation for treatment of autism in cases in which metal toxicity appears to have played a role. But it is worth noting that Dr. Brown, described by the Post-Gazette as “one of the nation’s foremost experts in chelation therapy,” obviously believes the relative risk to be the same regardless of whether autism is involved:
Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.

Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.

The correct chelation agent -- Calcium Disodium EDTA -- would not have pulled the calcium from the bloodstream, she said.

. . .

She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used ... because it may induce fatal hypocalcemia, low calcium and tetany.”

“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr. Brown said.

So it appears that I was right to urge waiting for facts before making broad generalizations. But it gives me no pleasure to be right. No matter what caused this tragedy, the Nadama’s loss remains. The way any of us can honor their grief is to learn from what happened.

The knowledge that the evidence now shows this incident to be a single case of malpractice rather than an inherent and fatal problem in the protocol will not stop the controversy. There will still be voices screaming of the dangers, although their anger is truthfully less about the dangers of chelation and more about the audacity of using a medical procedure to decrease the impact of autism.

Not long after this is posted, we will start to see comments urging a very different lesson than the facts suggest. Some of those comments will likely accuse me of using a dead child to make a point. That might be fair criticism so long as the accuser is not doing the same. Ironically, however, I expect that some of those who shout the loudest will be the same ones who will invoke this child’s name often to support their own narrow views. I am tired of the shouting and I am tired of the disrespect shown to the Nadama family. I pray that this will be the last time I feel the need to write of this incident, but I suspect that the actions of others will dictate otherwise.

Not long ago, we were urged to light a candle for Liz Birt. That was appropriate; she was a remarkable woman who deserved a great tribute. But tonight, I’m going to light a candle for Abubakar Tariq Nadama, and then I’m going to give my son an extra hug before he goes to sleep.


Blogger Wade Rankin said...

If Tariq died because he was autistic, it was because lead toxicity was part of the clinical picture of his autism. And saying chelation killed him is akin to ignore the apparent negligence by Dr. Kerry.

My wife is a nurse anesthetist. Part of her job is to make sure the drugs she administers are the correct ones. She can’t just rely on the pharmacy to do the job right; she must make sure. If she doesn’t do that, the consequences can be dire. Fortunately for her patients, she is very conscientious. If she were not, though, the resulting tragedy would be her fault, not the fault of the procedure. Blaming the procedure itself defies logic.

I am not advocating any procedures here. The choice to use any protocol, including any form of chelation, must be an informed decision made by the patient or parents, together in consultation with the physician. And one of the sad lessons here is that parents must make sure the physician is qualified to perform the procedure.

The lack of autism-specific safety trials should be considered, but if lead toxicity is part of the picture, it seems equally risky to leave it in there.

1/18/06, 11:13 PM  
Blogger Ginger Taylor said...

The article indicates an opinion by Dr. Brown, that “if it were administered accurately, the procedure would be harmless.” That statement is debatable. We must never ignore the fact that chelation, like most medical procedures, carries a degree of risk.

I know that I am being repetitive, but I really feel like this point is glossed over in discussing the risks of chelation, so please excuse.


If chelation carries such risk... if EDTA is a dangerous chemical...

Then why does the FDA allow it to be sold over the counter?

I just want consistency from the medical community.

1/19/06, 2:20 AM  
Anonymous Anonymous said...

hi kev
You say
Thats only true if you believe that heavy metals effect/cause autism.

But there´s another possibility. That heavy metals poisoning to be a comorbility of autism.

You also say
He died because his parents brought him from here to there to treat his autism. If he'd been truly lead poisoned then he could easily have been treated over here.

I am sorry but how can we have conclussions about why and based -on parents brought him to USA if we do not know. I do not think that these conclussions can be obtained with inductive thinking without further knowledge about their personal options. And I also think that they have right to maintain these decissions not public, because they are personal.In the world of personal option, each family has the right-and the duty- of responsible and informed decision. In this sense, we must be aware to ask about the safest procedures of the adequate protocols. I want these protocols to be available the most safe possible. Even so, I do not consider IV chelation for my son . But this is MY choice-and my husband´s. I have not right to say others what to do or not to do. If I am asked- and only if so-, I can give a personal opinion and include warn about safety and other personal thoughts, but I think that we must respect other parents. However, the need of enough and high quality information about safety , adequate procedures and options (including tests, and labs) is real so the part of information in the decission can be enough accurate.

You say
no safety or eficacy trials for any form of chelation and as there are no approved protocols, the field of using chelation for autism

I agree with you in the sense that chelation is not a treatment for autism for me, but to heavy metal poisoning. There are a lot of knowledge about chelation as a treatment for lead poisoning and , at the best of my knowledge, you are right and DMSA has been more studied. There are several published papers about the use of DMSA-and other chelators- in the field of heavy metal chelation.
I do not understand why it is so difficult to accept that I or others can have a position that is not from the GR and is not from yours, even considering the positives from one or other and also the negatives ones. Why if I try to include justice in my analysis it seems that I must explain over and over that I can consider partially the information. Why if I am honest I am criticised/questioned about my coherence? For me, such as is in the field of the analysis of the published literature on the field, there are very useful, useful and useless information.And yes, for me GR was helpful to think about mercury as a comorbility, even when I used different tests, protocols and doctors than the considered in their website and I respectfully disagree with their approach in terms of how they consider Autism as Hg poisoning and how they select the tone of the exchange many times. And your position was helpful to me to warn about safety and to let me know about other aspects in the field of neurodiversity, even when I did not change my mind or my actual course of action because I disagree respectfully in the conclussions and the tone of the exchange many times also. I also think that Autism is not only genetics because I think that heavy metal poisoning can be comorbility because of the child being autistic-considered so from birth and in some way "weak" to the environmental insult because of genetics. But it seems that this position is not understood or considered weak in some way so I must clarify over and over. I think that I, and others that think like me, deserve the respect of those thinking different.
María Luján

1/19/06, 9:07 AM  
Blogger Wade Rankin said...

Kev said:

->“Thats only true if you believe that heavy metals effect/cause autism. He died because his parents brought him from here to there to treat his autism. If he’d been truly lead poisoned then he could easily have been treated over here.”

I think I’ve made it pretty clear in the past that I believe metal toxicity can be a contributing factor to diagnosable autism. Although I cannot speak for them, it is apparent that Dr. and Mrs. Nadama had a similar opinion or we would not be discussing this. Assuming that to be the case, this child was autistic and lead toxicity was a part of the clinical picture. Again, I cannot speak for the Nadama family and I can’t tell you why they sought treatment here rather than the U.K. But it seems logical to want all autism-related treatments to be handled on the same side of the ocean.

->“EDTA overall was supplanted by DMSA a long time ago. Why wasn’t he using that? Why is EDTA being used at all?”

I’m not sure I would use the term “supplanted.” DMSA provides an alternative. I’m not aware of all the different reasons a physician might believe EDTA to be a better choice than DMSA for a particular patient. One reason I have heard (and I offer no opinion on the accuracy; it is simply something I have heard) is that gasto-intestinal distress can accompany the use of DMSA, and if lead rather than mercury is the problem, that EDTA is just as effective. Why EDTA was used in this specific case is something only the Nadamas and Dr. Kerry can tell us.

->“Chelation is not 100% safe, despite the claims of people that it is.

->As I recall Wade, you’ve said you believe the Generation Rescue website to be a good source of information. Do you think the bald assertion that ‘chelation therapy is safe’ is good information?”

I doubt your intention was to mislead anyone, Kev, but the “100%” reference is a bit misleading. Perhaps it would help if you could tell us who believes chelation to be “100% safe,” and whether you perceive this to be a widely held view. I certainly don’t interpret that to be a statement from Generation Rescue. Their site (the page you linked to in particular), which, by the way, clearly labels itself as “the opinion of parents, not doctors,” includes a paragraph declaring chelation to be safe. But it does not represent that safety to be absolute. Indeed, the first sentence of that paragraph reads, “[t]he side effects of chelation, at the dosing levels used with children, appear to be both mild and manageable,” implying the fact that there may be side effects even if chelation is properly performed.

GR’s discussion does not specifically describe the risk of improperly performed chelation. What disclaimer for any medical procedure have you ever seen that warns of the obvious danger of extreme stupidity? Although I would have discussed specific adverse effects of DMPS and EDTA in addition to DMSA, I have no problem with GR’s statement with regard to safety.

Again, it is grossly misleading to say that the Nadama’s son would still be alive had he not undergone chelation. Had chelation been properly performed, he would still be alive and, again, we would not be having this discussion. Whether properly performed chelation would have alleviated some of the symptoms of autism is something we shall never know.

1/19/06, 12:36 PM  
Anonymous Anonymous said...

Mr Rankin,

Excuse this if you consider this to be an overly long comment, but I think it puts a different light on what Dr. Kerry was doing when he went into chelation (perhaps to broaden his customer base so he could get that Alpha Romero he always wanted?)
Dr. Gary Gordon appears to claim he was the supplier of EDTA to Dr. Kerry, the man who seems to have killed Abubakar Tariq Nadama. Gordon looks like he is trying to put as much distance as possible between himself and the death.

He says the kind of EDTA that Kerry ordered from him was "disodium EDTA", which is the kind that would be most likely to stop a child's heart if give in an "IV push".

One thing about ratbags and slimeballs they don't want to take the fall for each other.

"Dear Health Care Professionals:

You may soon read and hear the kind of hysteria and negative press that I expected to see, but it will get FAR WORSE before it gets better. As of this moment, I can only assume that there must have been a substantial deviation from the standard procedures that I, and all of you, have established for the safe administration of Calcium EDTA. As incredible as
it may seem to those of you belonging to this discussion group,

the possibility exists that the child was treated with Disodium EDTA administered by IV Push.

I am forced to consider this unfortunate explanation

unless there was some major undiagnosed illness in the child that no one suspected,
such as a major heart defect or perhaps an aneurism that ruptured at the
exact time the patient was receiving the IV Push of Calcium EDTA.

However, the autopsy has been completed and the results were inconclusive so that they have ordered additional tests, which may take up to 5 months to complete.

This means that there is no obvious explanation for the death of this child.

My fear is that if someone who is not knowledgeable in chelation

and has not learned that this is complex chemistry

assumes, for example, that all that they have to do to provide magnesium EDTA or Calcium EDTA

is just add either magnesium or calcium to a syringe containing Disodium EDTA.

We could have a serious problem because Disodium EDTA has a black box warning about rapid administration to children and simply adding something like Calcium or Magnesium does not fully convert Disodium EDTA to Calcium EDTA.

Then there is also a problem with discomfort,

if you tried to give yourself an IV push of diluted Disodium EDTA

the pain could be extreme

so you might wind up increasing the dose of Lidocaine

and again we can get into problems with the heart

if too much of a "caine" if given intravenously.

So let's look at the big picture, there are NO DEATHS occurring when EDTA, either calcium or Disodium are PROPERLY administered. Now the media will try to make chelation out to be fraudulent and the tests that we do to measure lead etc as being meaningless. Amazingly they will bring out Quack buster Barrett who with a little more effort we may be able to one day put behind bars for his lies and incompetence.

Thus I have to conclude some error in rate of administration, dosage, method of preparation probably occurred; in fact, I now believe this is most likely rather than administering the correct drug, Calcium EDTA, intravenously, which even in children is safe and effective.

Doctors who have been providing this treatment to children can hardly stop talking about the remarkable successes they have been witnessing with children responding far more rapidly than we could ever do with just the oral Calcium EDTA that I have been advocating for so long.

We know that worldwide sales of all forms of EDTA have been steadily increasing and that based on logical calculations it appears that well over 10 million patients have been safely treated with either Calcium or Disodium EDTA over the past 32+ years without a single documented fatality, as long as the established protocols were followed. All the evidence to date that EDTA is perhaps the safest therapy offered in medicine, outside of placebos.

To my knowledge, EDTA has been safely administered for nearly 50 years with the only deaths occurring in the beginning, with terminal cancer patients suffering uncontrolled hypercalcemia where inappropriate doses of Disodium EDTA were administered by rapid infusion to patients with known compromised renal status.

With the extensive proof now existing that everyone today has nearly 1000 times too much lead in their bones and Harvard publishing that this bone lead will compromise vision there can be no argument that we all have some heavy metal toxicity. Then once we conclude that government cannot stop the mercury, cadmium, lead etc from going in the air, and thus into everyone anywhere on earth, then it becomes a matter of personal choice, live with these heavy metals or remove them. Oral chelation is clearly necessary since bone lead will take 10 years to turn over for the average adult, but some of us want results NOW. Nothing is as effective as the 147 fold increase in lead excretion over base line that IV Calcium EDTA, PROPERLY FORMULATED, was documented to induce by Doctors Data with the help of Dr Whitaker's staff.

Thus I must extend my sympathy to the family of the deceased 5-year-old boy from Nigeria whose brave mother came to the Pittsburgh area from the United Kingdom to seek treatment for her autistic child. She was seeing clear improvements in her son. This was the third infusion he had received. He apparently had a cardiac arrest and was unable to be resuscitated immediately following this third infusion of what I fear was not Calcium EDTA, which is the ONLY form of EDTA that I have advocated for the
rapid infusion

I hope those who have experience with it in their practice are NOT GOING TO STOP USING it that you have the "rest of the story", as best as we can establish it at this time.

Please understand that the involved doctors

cannot be expected to admit anything on advice of their attorneys.

I have only checked to see if they have ever purchased Calcium EDTA

and found the answer was


leading me to compose this email

in an attempt to diminish the harm

that the media will do to everyone who otherwise could have been receiving oral and or IV chelation and will now be afraid.

This email may be copied and handed to your patients in an effort to meet the need for a fully informed consent.


Garry F. Gordon MD, DO, MD(H)
President, Gordon Research Institute"

Now you can go consult with Dr. Gordon for advice on chelating your child, if you desire, but I wouldn't let any of these people within a mile of my dog, much less my precious child.

1/19/06, 5:29 PM  
Blogger Alana said...

Thank you Wade for this sensible, enlightening and heartfelt reminder...I really admire that you bravely and reasonably express your opinions. Many people I know wonder why I don't talk very much about many of the issues in the Autism community, even though I have been a part of it for so long, and I always tell them, "Because I don't like yelling."

1/19/06, 7:17 PM  
Blogger Bartholomew Cubbins said...

If opinions make one brave then are Sue M. and John Best Eowyn and William Wallace, respectively (or vice versa)? I respectfully disagree, especially with the likes of this.

I just have to ask a couple of questions since it's being speculated about: is there a report that the child had a lead poisoning problem? Do most autism chelation practitioners label a child as lead poisoned? If they do, do they do it to get the meds, to ward off malpractice suits, or to justify the procedure in the eyes of a governing/supervising organization?

Re: Ginger - is EDTA suitable (purity and form) for IV use available over the counter? That would surprise me.

1/19/06, 10:46 PM  
Blogger Wade Rankin said...


I’m a little fuzzy on why opinions would make one brave, and I think I’ll pass on getting into any personal issues you may have with particular individuals. I had never seen the “Hating Autism,” site before, and now that I have I can’t say I find it to my taste. But that’s only my opinion. (There you go; I have opinions but I don’t seem to feel any braver.)

The real issue you raise is about lead, and I’ll try to answer as well as I can. Keep in mind, I am not a scientist, but frankly there’s not a lot of published science one way or the other on this. Also keep in mind that I am one of the many people in the so-called biomedical community who believes we need to look at a broader range of causal factors, and not restrict ourselves to the mercury connection (although mercury is probably the greatest single factor).

What I do know is that there are reports of many autistic children with high levels of lead as well as mercury. Whether this is a separate phenomenon or it is related is something I can’t say, although it would seem to make sense that having an immune system that has been compromised by mercury would make one more susceptible to all kinds of toxic insults, including lead.

In any event, many autistic children that have elevated lead levels have responded well to EDTA chelation. This is, of course, completely anecdotal, but again it makes sense given the general hypothesis of a connection between metal toxicity and autistic symptoms. I have no inside information regarding the Nadama case, but I don’t see any reason why EDTA would have been involved if lead was not an issue. Of course, there may be others who disagree with me, but I don’t think IV-EDTA would be a terribly good choice if the only issue was mercury.

1/19/06, 11:23 PM  
Blogger Alana said...

Wade, I may be wrong, but I think that BC's reference to "brave" was because I was thanking you for your bravery...and I want to say that yes, I believe that stating opinions rationally in this often hostile community makes one brave. I am not so brave, yet I respect those who are...especially when they are quite logical, measured and level-headed.

1/20/06, 12:03 AM  
Blogger Bartholomew Cubbins said...

The brave comment was just fun - and I never, ever pass up a chance to post about Eowyn.

I don't think anyone needs to be a scientist to look at the lead issue. Either someone has lead poisoning or they don't - the test is fairly straightforward and readily accessible from almost any health clinic (we had 2 done ages 2.5 and 3.5 and we were on public assistance / state-provided healthcare plan at the time). If someone did have lead issues it ought to jump out at any doctor, not just a DAN! doc.

So I've heard this term, off-label, which I interpret as a doctor prescribing X to treat Y, but on paper s/he's saying that Z is being treated. If this happens, why does it happen (specifically in the case of chelation)?

1/20/06, 7:04 AM  
Anonymous Anonymous said...

EDTA can be sold over the counter in the US because of passage of the DSHEA in 1994.
This legislation is a quack's dream come true.
Thank you, Mr. Hatch, from Utah.

DSHEA made it easy for snake oil salesman to market pills and herbs for "optimum health". Those same pills and herbs can contain mercury and lead which would increase your exposure to those metals without your knowledge. DSHEA is a nightmare we will have to resolve eventually.

The FDA can only get involved when the health claims and cures are made and when the dead
bodies start piling with the ephedra issue.

1/20/06, 12:41 PM  
Anonymous Anonymous said...

Do a google search on Versene, which is calcium disodium EDTA. It's a fascinating lesson on the topic of "dangerous" chemicals and toxicity and dosage.

Versene is perfectly yummy stuff that they add to Mayo and canned clams and other food products without too much concern, and it's also terribly dangrous stuff that will eat through your shoe if you spill it, according to someone who claims to know this... it's used in industrial cleaning. You know, industrial strength cleaners? It can clean out pipes. They also use it in bleaching stuff like fabric and paper.

So, I probably couldn't go buy a 50 gallon barrel of the industrial strength stuff without signing for it, but I can eat it in a tuna sandwich.

Makes you wonder if the chelator in the mayo cancels out the mercury in the tuna, doesn't it?

So, yeah, it's EDTA is available at certain dosages over the counter. You can't get the stuff in injectible form OTC, right? Sorry, but that's just rather obvious to me. I don't get why anyone would wonder. You can get drugs that are Rx at a high dose and OTC at a low dose, doesn't seem to puzzle most people why that is....

No one is supposed to be using disodium EDTA on children. That's my understanding, not under any circumstance. Kerry needs to pay dearly for this error. It's beyond the pale. It's like drunk driving at high speed while blindfolded in a school zone when the kids are just getting out of school. It's that irresponsible.

1/21/06, 2:51 PM  
Blogger kristina said...

Keep the candles alight and, some day, we'll get more glimpses of the truth---thanks for giving some glimmers.

1/21/06, 9:07 PM  
Blogger Anne said...

One conclusion we can draw frm reading this story in the Pittsburgh Post-Gazette is that mixups of these colorless, odorless, sound-alike chelators are a risk of chelation therapy.


1/21/06, 10:42 PM  
Anonymous Anonymous said...

"that mixups of these colorless, odorless, sound-alike chelators are a risk of chelation therapy"

I wonder how many ENT docs have EDTA (of any kind)on hand to chelate for lead or mercury? Doesn't that sound strange to anyone else?

Wouldn't a child normally be sent to a pediatric hospital/clinic if blood levels of lead were high?

This chelating going on makes no sense.

Doctors are hooking up old people and little kids to an IV of EDTA in the same room for different purposes and the doctor isn't a pediatrician or a specialist in geriatrics.

Is there some way of "injecting sense" into the doctors or the patients who are lured into these spurious treatments?

1/22/06, 1:49 AM  
Blogger AutismNewsBeat said...

Does either EDTA or DMSA cross the blood-brain barrier? If not, then how could it possibly cure autism? Unless you don't accept that autism is a neurological condition that affects the brain.

8/23/06, 1:58 PM  
Blogger Wade Rankin said...


I was a little taken aback to get a comment to this post over seven months after it went up. Moreover, I am always mystified as to why people come to a blog that concentrates more on the political aspects of autism and autism research, and then pose specific scientific or medical questions. Naturally, I like to think that I understand the emerging science well enough to discuss it intelligently, but I am neither a scientist nor a physician.

I am a parent who believes that approaching his child's autism as a biomedical problem has yielded positive results. That does not mean that what helps my child will help others, nor does it mean that what helps others will necessarily help my child. Accordingly, I try to avoid discussions of specific interventions, and I discuss such issues more generally.

Even so, your comment raises a gross misconception of the role of chelation as it relates to particular cases of autism in which heavy-metal toxicity may be involved. My understanding is that neither DMSA nor EDTA crosses the blood-brain barrier. Therefore, if chelation was tried as the only component of a so-called biomedical intervention, it would probably not accomplish much in the way of a "cure." On the other hand, if heavy-metal toxicity played a role in triggering the processes that create autistic symptoms, ignoring chelation may arguably limit the progress that could be accomplished by other interventions used in a particular case.

Again, this is all very generally stated. There is no such thing as a single clinical picture common to all autistic individuals, and therefore no one intervention that should be used in all cases.

8/23/06, 4:16 PM  

Post a Comment

<< Home